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LyndaC View Drop Down
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    Posted: Oct 22 2022 at 10:30am
I am brand new to the forum, I so appreciate having this space to talk. 
I am 52, diagnosed TNBC in April of this year. Grade 3, no staging done yet. 
Did 1 round of AC in May, got approved for Keytruda, restarted chemo in June with Taxol/Carbo/Keytruda. 12 weekly cycles of that, then 1 more AC but tumour doubled in size, so chemo was stopped altogether. 
Due to extreme hyperthyroidism, Keytruda is paused. Treating this with beta blockers which are working well so far. 
Had another CT scan last week and waiting for results. Had another biopsy Monday and waiting for those results. Reason for this biopsy is because my onco said I may have a second cancer in that tumour OR it may be morphing into another cancer subtype.
Spoke with my surgeon yesterday and he said because tumour is 5cm, we must do a mastectomy, but until biopsy results come back, everything is up in the air as they may try another chemo on me if I present with different bio markers from the biopsy. 
The waiting game is awful, as you all know and I feel so defeated with no chemo response.
My onco also said my tumour is very hard, and TNBC tumours are usually softer or squishy. Mine is like a ball and you can roll it around, which he was confused with too.  

Thanks for reading. If anyone here has had chemo resistance, Iíd appreciate hearing from you. 
Lynda
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cookie54 View Drop Down
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Joined: Oct 24 2020
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2022 at 4:56pm
Hi Lynda Sorry to hear your having a difficult time and your cancer is being resistant. I know how you feel, we are so hopeful when we start our chemo plan and then we are let down. It's definitely a tough pill to swallow.

I will try to condense my tnbc story. Was diagnosed stage 1 at 50, had bmx and A/C with good response. Four years later recurrence in axilla stage 3C had gem/carbo and keytruda and surgery to removes lymph nodes. Like you was disappointed because I didn't have complete response to chemo. So then Xeloda was recommended to help reduce my chances of recurrence again. A year later I am now stage 4 with recurrence in my lungs.

So I totally understand the fear and disappointments after all the side effects we deal with we just want to be healed! Don't give up it seems like your team is on top of this and they should get more info on your tumor from this new biopsy. Guessing they did genomic and genetic testing? Are you PDL 1 positive since you had keytruda? We are very fortunate to have all the latest research and testing that wasn't available before. I have personally experienced the advances over the last 6 years I just pray that they continue to make progress to help so many wonderful lives that have been cursed with tnbc.

Best wishes and come back and update us. Sometimes this site is quiet but I still check in to see who else is out there. This can be a lonely disease at times but you are not alone!Hug
Andrea
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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LyndaC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LyndaC Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2022 at 10:54am
Thank you, Andrea. 
I am sorry to read about your journey, and you sound so positive, something I need to be aware of in myself more often. 
I am unsure about being PDL 1 positive, but I did have the genetic tests. Iím upset that I may not get the chance to keep trying Keytruda, but this thyroid thing is awful, so I donít know what theyíre going to do regarding that in the future. 
Thanks again for writing Iíll update when I have more news. 
Good luck to you in your journey, TNBC is lonely, youíre correct but so happy I found this forum!
Lynda
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cookie54 View Drop Down
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Joined: Oct 24 2020
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2022 at 12:13pm
Lynda, Thanks! Yes positivity is a must for sure! I understand about Keytruda my doctor stopped mine after surgery when I still had cancer in the nodes with my recurrence.
Interesting though this year with my metastasis i went for a second opinion with a well know oncologist who does research with TNBC. So I am now back on Keytruda  with Xeloda because I am PDL 1 positive she felt I would still benefit from it. Fingers crossed here. Hoping when they get your thyroid under control maybe it's a possibility to resume Keytruda? Although depending on what your biopsy reveals maybe a different immunotherapy. Try not to worry too much if you are confident in your team I'm sure they will come up with the best plan of attack!
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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